The most common symptoms of Nicolaides–Baraitser Syndrome are severe mental retardation with absent or limited speech, seizures, short stature, sparse hair, typical facial characteristics and prominent finger joints and broad distal phalanges.

Millie’s mother Jenny Jones has been with Millie every step of the way.

“It was only 18 months ago that we were able to diagnose Millie,” she said.

Millie has been fortunate enough to attend school up until last year.

It was after school that Ms Jones discovered a need for “one on one” care on a daily basis.

“There are services in town that do a great job with mentally disabled people,” Ms Jones said.

“Unfortunately for Millie she needs that personal one on one care that is hard to find.”

Recently Ms Jones and her partner Ben Wilton decided to invest in a purpose built centre that would be a useful “safe haven” for both Millie and her carer Debby van Kralingen.

“It’s just a place where she can go and relax and enjoy that one on one care,” Ms Jones said.

Ms Jones has recently been awarded self managed funds from the government which will provide funding for one on one care.

“Millie can now go to the pool or on outings and return back to the centre to relax,” she said.

The ‘Milliecentre’ is located on the corner of Brand and Iris Streets.

According to Ms Jones Millie will not be the only one utilising the centre.

“We are hoping to have a non-for profit organisation where carers can meet on a weekly or monthly basis to discuss related issues,” she said.

“We would love to open this centre up for other people.”

Any carers or interested parties who would like to get involved with the ‘Milliecentre’ can contact Jenny Jones on 6752 8108.